December Recap

December was a rough month for Job. He had several little colds and while they didn't send him to the hospital like they would have last year, he was still uncomfortable and unhappy.

Job also got incredibly frustrated by his communication difficulties and our inability to understand him accurately (and quickly!).

Put together, these two issues manifested (through the middle of December throught the middle of January) in the grumpiest attitude I have ever seen Job exhibit. It was like living with a stranger! He was almost constantly angry at our feeble attempts to follow his requests and if he wasn't angry, he just didn't feel well.

This last week has shown such a stark contrast in his demeanor: he is back to his cheerful, contented, interactive little self.



The first week of January I started making some waves to get Job into a more intensive track for Speech Therapy. That's a whole other post that I will write soon, but he is now in weekly SLT and I'm really excited about our plan.

In addition to the facts that he now feels better and we're now communicating a bit better, Job also hit a new "ability spurt".

I'm making that phrase up, I suppose, to try to describe a very pronounced phenomenon that we see regularly in Job... at least after the fact.

This is the new area of research for CHD kids that I am so excited about and desperate for: how does Job's constantly inadequate oxygenation affect his physical and cognitive development?

The theory (that I absolutely believe to be true for Job) is that this inadequate oxygenation impacts cognitive function, especially in the area of executive function. This has been studied in patients on ECMO (a heart lung machine that temporarily keeps these organs working for critically ill patients as they recover from a trauma), but hasn't really been studied for kids who live on low oxygen usually (like Job who is at best getting 75% of the oxygen we with typical circulations get into our blood flow).

Job can really only work on one skill at a time. We've seen this so many times, but I always forget again as he's working on the next skill. If he's learning to take steps, he can't communicate. Well, he learned how to take steps in October and lost a huge chunk of his verbal/non communication. Once he was somewhat steady on his feet, he did gain back a few words and so I mentally checked off that "ability spurt" because he was again making sounds and he was still taking steps. Great! Done with that single focus on steps and back to talking.

But it has become so clear in the last two weeks that he was still working so hard on gaining confidence in his ability to take steps that he still just couldn't communicate well. He couldn't coordinate his body and brain and mouth to cruise around on furniture with confidence AND be receptive to our efforts to help him communicate. He couldn't try any new signs or words or sounds or gain back what he had known before. It was too much for his brain to process all at once.

I was so frustrated and worried that he refused to mimic us or work with us on anything to aid his communication even though he was so annoyed (and therefore should be motivated)! I think we have picked up more tools for how we communicate with him, as we've strategized with his various therapists or a few friends who have experience in this area. I think he's just gotten older and learned more. But there is an ability to participate now that there just wasn't a month ago, two months ago.

It's exciting to see Job be so much more receptive to working with us. But really, he's most interested in mimicking his big brothers again. 'Oh, Isaac is doing something? I want to do it!' They are my best helpers to help Job. Here's an example I recorded yesterday, of Job learning to sign "please":https://youtu.be/zHsXldeCXBg

November Update

Job is practically all grown up! This is one of my new favorite photos. He was so proud of himself for climbing up onto the arm of the couch all by himself, multiple times, and is studiously avoiding looking at me so he won't see or hear me tell him to come down.

Short update: Job's fine. No big changes!

Long update: Job climbs up and down the couch and stairs with ease. He cruises (takes steps, while holding onto something for stability) along couches or tables or stools or our legs but refuses to make the next jump to reaching out between a stool and couch, if there's a bit of a gap. He will take some steps holding onto someone's hands or his push cart, but he has to be interested; he won't just perform for us on cue.

Job has always been so sweet and cheerful, but we're starting to see him insist on his Definite Opinions. It's developmentally totally appropriate, but it is jarring to see him be so demanding suddenly.

He gets especially frustrated because communication is still difficult for him. We've made some gains but are definitely working hard to help him help us to understand what it is he needs.

He can say "Gan-pa," "uh oh," "hi," "peek boo" and "'at" ("cat" but used for all animals); he signs for "more" and nods his head "yes" and shakes his head "no"; and he makes a quacking noise and pants like a dog. He said "Gan-pa" for the first time back in May, so it's not as if we're rapidly progressing in our language acquisition attempts. Still, I remind myself that we are progressing. We see our speech therapist as I request but since there is progress, we're holding off on weekly therapy/other interventions.

It is very hard for Job to work on his gross motor skills AND increasing his language (whether by sign or speech). He can only focus on one or the other, so we'll see some language gain (a new word/sign) and then a few weeks later he'll switch to some new gross motor gain (more stable foot placement), then a few weeks after that, some new language gain.

This is almost certainly because of the way his body and brain are (inadequately) oxygenated. I am very interested in the current studies on low oxygenation/oxygen deprivation and how this affects motor planning and mental processing. This is one of the big new areas of research for HLHS kids (as part of the general trend of researching how quality of life can be increased rather than "just" keeping these kids alive), and I can't wait for conferences/papers to be put together/published on the topic. I want this to be a more frequent discussion than it has been.

After his cold and then GI issues stemming from his cold (mid November) we went back on two of his digestive meds. So we're back up to 8 meds and 5 med times. It feels like backwards progress, but I am grateful he's keeping food down again. We're going to make a push to get off of these two meds in early January.

Job had his big cardiology check up last week and is doing ok. We need to adjust some of his medications and perhaps go on a few additional supplements/meds because his heart function isn't quite where we want it. Though his tricuspid valve regurgitation is unchanged, it's likely we won't be able to wait until OHS #3 (the Fontan) to deal with that problem and will be getting an extra OHS next year or so. Currently, his blood pressures and flow are still too high for him to be eligible for the Fontan (part of why we'll likely do a valve repair/replacement sooner rather than later), which is part of the med adjustments we're doing.

None of that is new news, and he's stable, but I still struggle to not be disappointed that there wasn't some miraculous improvement.

We'll continue to dialogue often with cardiology, but don't have another cardiology appointment on the schedule until April. And we'll likely do a cath in the spring/early summer, to get some hard numbers on his pressure problems so we can perhaps then start to attack that issue more intensely in preparation for Fontan eligibility. I am NOT used to only seeing them every four months. It's exciting, yes, but it's also a bit intimidating. And it's very odd! I still expect at least monthly appointments, if not more often, because that was our life for so long.

I've been trying to figure out how to articulate what it's like to be in this new, awkward stage, of Job's medical journey, but just can't figure out what to say (thus no posts). There isn't some clear cut goal to strive for anymore (like getting off oxygen), and he looks so much healthier. Everything is better! But it's still hard. It's not "normal". He's not actually "healthy". So how do we proceed? No answers here, though it's probably just "day by day".

GI Update

Job is feeling much better! He has some of his energy back and most of his joy as well.

We had a good gastroenterology appointment today and came up with a game plan for the next six weeks. Job is going back on the digestive meds we weaned off of back in September: erythromycin and omeprazole.

More labs were ordered and I'm psyching myself up to taking Job in for the necessary bloodwork tomorrow.

And then, after sitting so still and quiet in the office, we went to Cabella's to look at the taxidermy animals. Job delighted his brothers and I by looking so cute in this coonskin cap and exasperated us by pointing and calling every animal a "'at" (cat, the word he uses to categorize animals, and one of only two or three words he can say).

ER Visit

Job has been throwing up this week. While we believe it's only a virus, we were concerned about the duration as well as dehydration and weight loss, so we brought him to the ER today. Our first ER visit of 2017!



Until he provides a stool sample, tests can't determine what (or if a) bacteria/virus is the root cause.

He is being prescribed a week on reglan to help him keep food and drink down and we will be following up with gastroenterology and cardiology later this week.

It's hard to see the great toll a common illness wrecks on his compromised body.

October Update (Meds)

In the span of a week Job got to visit with three of his great grandparents! Here he is with my dad's Dad, Pappy.

Job started pulling up to stand in mid September and these days he's standing more often than not!

He got off two of his digestive meds, omeprazole (for stomach acidity) and erythromycin (for gut motility), at the end of September and so far, so good! We are so thrilled! So now he's only on miralax as far as his digestive system goes. He's quite dependent on it and if I'm even a few hours late with a dose he has trouble for a few days.

So now Job is only on enalapril (heart function), lasix and spironolactone (both diuretics) and baby aspirin (for clotting) and sildenafil (his vasodialator). We had to do all sorts of things (stents, surgeries, meds) to get to a place where sildenafil would help Job get off oxygen, but I can't believe how helpful it is!! You can tell when the 8 hours between doses are almost up because he starts turning a bit blue again.

We're waiting to find out if Job will qualify for synagis shots again. They're so expensive ($1,200/shot/month) that they don't just get doled out easily, but we'd really like him to have that extra RSV protection. Studies have shown that for medically fragile kids ages 1-2 yo they're not always effective (or at least not as much as they are for kids up until 1 yo), but Cardiology is pushing hard for insurance to cover it again for Job this year.

That's my meds update! More later!

Plane Trip!

I've been chastised for not posting as often, but I find myself struggling to articulate anything right now. So, I write half a post and then quit because I don't know how to communicate my jumbled thoughts and emotions.

Last October Job was struggling for his life. This October we flew on a plane to Florida to meet Seth's grandpa and hang out on the beach and see some alligators.

Words cannot express the utter amazement and wonder I feel at writing those two sentences!

I promise to write more about what Job's been up to lately, but here are some fun pictures in the meantime:

Job Cruises

Job continues to thrive!

Two days ago (the two month anniversary of the last time he used oxygen), he started cruising at PT! https://youtu.be/EeoHtdRVCzU

He kept "walking" back and forth, along the bench, and I could hardly even see through my tears. His gross motor skill progress has just exploded these past two months! He couldn't be more proud of himself - except that he thinks he's at least 4 (if not 6) years old and should be able to do everything his big brothers do (and he has the bruises to prove it)!

Today is the one year anniversary of his hospital discharge after the Glenn (open heart surgery #2). I've been thinking about this a lot, because last September/October was so scary and so dark. Why? Why was that surgery recovery so much harder for me emotionally than his Norwood (open heart surgery #1) recovery? The Norwood was the more complicated surgery.

I think it's because I was so much more prepared to lose Job back in April 2016. Or even any time that summer. But I had such high expectations for the Glenn. It was supposed to change our lives because, afterwards, Job would be so immediately better. He would be satting so high and he be so healthy! "Just make it to the Glenn" was a constant refrain. I looked at it as this big destination. All around us, other HLHS patients thrived after the Glenn.

And then he had a horrible recovery. Nothing about the subsequent months went as it was supposed to. I kept waiting. And waiting.

I searched and searched for other hypoplast kids dependent on oxygen post Glenn. For other kids with AVMs. It was lonely. His doctors were surprised and frustrated too. It was scary.

I am so excited and oh so thankful that Job is doing so well now. But there has been a large part of me that can't quite believe it yet.

It felt like such a big accomplishment when Job got off oxygen. Such a tangible, long-awaited, milestone. But emotionally I kept holding my breath.

I don't know if I can do that anymore, though. There's something about Job taking steps that broke through my defenses. I'm now just so absolutely excited and hopeful. I think our other kids were so excited about walking that I've held walking up on this pedestal for Job. And he had been progressing so slowly that walking seemed so far off. But now he's doing it!

I wish I could adequately capture his jubilant pride on camera. He is so excited to do everything and he wants to make sure everyone watching him is excited too.

I know he's still ridiculously sick and his poor body is irreparably broken. But suddenly that's not my overarching thought any more. We're not operating on such a thin margin of error. He's gaining strength and has more of a reserve. The focus is expanding.

I'm scared. If I just expect something bad to happen, then it will hurt less when it does. But if I'm hopeful, then it will hurt more when something bad happens.

But Job is doing so very well that it's easier to get caught up in his joy and excitement about life. I can compartmentalize a bit more now. This is going to be a struggle for me for the rest of Job's life, but I'm thankful for this bit of progress. I'm recovering just a bit from the trauma of this last year.

I like verses and songs about hearts now, more than I ever have before. There's a double meaning that's so profound to me as I read verses like these, in Psalm 147:

"He heals the brokenhearted
and binds up their wounds.
He determines the number of the stars;
he gives to all of them their names.
Great is our Lord, and abundant in power;
his understanding is beyond measure."

My prayer has been for Job's literal, physical broken heart to be healed. But it's also for his, for my, for our, figurative, spiritual broken heart(s) to be healed. And even in the middle of the most scary and most painful moments, we have seen that to be true.

This last year one of my new favorite bands has been All Sons and Daughters, and this song has particularly resonated with me because of the line about broken hearts: https://youtu.be/uHz0w-HG4iU

"You give life, You are love
You bring light to the darkness
You give hope, You restore
Every heart that is broken
Great are You, Lord

It's Your breath in our lungs
So we pour out our praise
We pour out our praise
It's Your breath in our lungs
So we pour out our praise to You only"

While I have tried to pour out my praise, despite my *feelings* (which certainly have often been despondent), there is now a new "lightness" to my heart and I can sing along to this song with fewer tears in my eyes. This is a respite that we're very much enjoying right now and we're so grateful that God has seen fit to allow it, I think especially because we know that it is temporary.